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Tuskegee Syphilis Study - Parallels | 5

Tuskegee Syphilis Study - Parallels | 5

Tue, 09 Jul 2019 07:05

Black babies in the United States are twice as likely as white babies to die before their first birthday. It’s an alarming statistic that further highlights the wide disparities in healthcare that exist between black and white Americans. And while there is no direct connection to the Tuskegee Study there are parallels. We’ll talk with Priska Neely, reporter for Southern California Public Radio, who has dived deep into the issue of black infant mortality, its causes and why it has persisted for decades.

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From Wondry, I'm Lindsay Graham and this is American Scan. Today we conclude our series on the Tuskegee Sivvla study. We'll be talking with Prisca Neely. She's a reporter for Southern California Public Radio. As we noted in our last episode, wide health disparities still exist today between black and white Americans. Perhaps the most shocking of these disparities is the infant mortality rate. As Prisca has reported, black babies in the United States are twice as likely as white babies to die before their first birthday. A myriad of factors such as poverty, access to health care and education contribute to this problem. But more alarming is that this issue has persisted for decades with no sign of change. Prisca has put considerable time into researching this issue and she'll discuss her reporting, her personal connection to it, and why solving the problem will require tackling structural and institutional racism. American scandal is sponsored by the new ABC drama Alaska Daily when an indigenous woman goes missing in Alaska. It sparks new questions about other missing and murdered indigenous women. And that's where the thrilling new ABC drama Alaska Daily begins and where it's headed will have you on the edge of your seat. Two time Academy Award winner Hilary Swank stars as Eileen, a veteran reporter who joins a team of local journalists working to bring the truth to light. From Academy Award winning screenwriter Tom McCarthy, Alaska Daily premieres Thursday, October 6th on ABC, and streams next day on Hulu. If you're into true crime, the Generation Y podcast is essential listening. We started this podcast over 10 years ago to dissect some of the craziest and most notable murders, crimes, and conspiracy theories together. And we'd love for you to join us. Follow the Generation Y podcast on Amazon Music or wherever you listen to podcasts. Prisca Neely, thank you for joining us today. Thanks for having me, great to be here. Now the Tuskegee Cifalist study and modern infant mortality rates are completely separate issues. The study was a large conspiracy that purposefully harmed a specific set of African American men from the 1930s on. The issues you reported on feel much more widespread and much more modern. And at the same time, not modern at all. I'm wondering if you see any parallels here in terms of the relationship between doctors, the government, and the healthcare system, and African Americans? Yeah, I mean, as you said, it can seem like these two topics are not at all related. But when I first got the request to talk about this, you know, Tuskegee was actually something that came up in a couple of interviews that I did while reporting on this project. I was talking to someone who runs one of the black infant health programs. That's a program that was created to deal with this issue of infant mortality. And she works within the LA County Public Health Department. And she actually keeps some materials hung up in her office about the Cifalist experiment. And I was going back and listening to the tape of my conversation with her. And she said that she keeps those papers there because she wants to remember not really that it was something that was perpetuated by the health department, but that it wasn't that long ago. You know, that it sounds like something that was, you know, ancient and historical and alarming. But it was really in our recent history. And so when she talks about doing outreach work around infant mortality about, you know, trying to get black women care about, you know, trying to support them and shield against racism and society, she says, you know, you can't do that work without remembering some of the things that have happened that have completely fractured trust in the past. So I think that, you know, these issues are definitely linked in some ways. Well, let's talk about the issue that is that you're reporting centers on before we get into the details of black infant mortality. I'd like to know just how you discovered the issue to begin with. You wrote an article last year that you first heard about these statistics when you're at a conference on mental health. Can you tell me what you heard and what you felt in the discovery? Yeah. So I cover early childhood issues and I had just come on to the, to the beat and I was kind of figuring out exactly what I wanted to do with that kind of specific, but broad world. And I was attending a conference about maternal mental health and there were a bunch of different breakout sessions. And one of them was about black women and childbirth. So as a black woman, I was kind of drawn to that. And that was the first time that I'd ever heard the statistic that black babies in the United States are twice as likely to die in their first year of life as white babies. And I had never heard that statistic before. I'm sitting there kind of shocked by that and was immediately shocked again once I, you know, I kind of, there's some assumptions that may enter your head when you hear that about poverty and access to health care. But immediately those were challenged when I learned that it's not just about socioeconomic status. It's not just about access to health care, but a black woman with a college degree is still more likely to lose her baby than a white woman who hasn't finished high school. I learned that pre maturity is actually the leading cause of the deaths. Babies who are born too early, too small. Black women have a much higher rates of going into pre term labor. And when I heard that, I realized that this is something that had touched my own family because I have one sister who lost two babies who were born premature. And I have another sister who had my nephew who's now 12 and doing great, but he was born two months premature. So when I heard this, I immediately like texted them and I was like, you know, have you ever heard the statistic? Did you, did you realize that, you know, your experiences were part of this larger trend? And they had no idea. They had never heard of this issue. It wasn't anything that had really been discussed with them and their medical care is as something that was, you know, that they didn't know that they were kind of at higher risk to begin with. And so that's kind of what set me on the path of reporting a big project because I realized that it wasn't just them. There are so many black women who have had experiences like this and don't realize that they're a personal pain. My sister said something that I won't forget, which is that, you know, we don't realize that this is more than just our bodies. Well, let's stick with this statistic for a moment because it is a startling one that black babies are twice as likely to die before their first birthday than white babies. It's alarming. And as you kind of indicated, you might think, okay, this is probably a socio economic difference. You know, we long understood that there are health repercussions to poverty. But the science and research on this may indicate that it's not just a socio economic issue. It might be a systemic one, a societal issue. So what has this research shown us and what conclusions are we left with? Yeah. So I'll take you back to 1984. In my reporting, I found a transcript of a congressional hearing from 1984. It was called infant mortality rates failure to close the black white gap. And this was something that I was surprised to find because it was such a long time ago. And I didn't realize that, you know, that there had been that type of national attention on the issue back then. You know, back then, the infant mortality rates across the board were way higher than they are now. But you still saw that black babies were dying at twice the rate. And the assistant secretary of the Department of Health and Human Services at the time, a guy named Edward Brandt. You know, he was talking about those gaps. He was saying, you know, if you take a group of comparable black women and white women who are college educated, married, receiving total prenatal care from the first trimester all the way through the rate of infant mortality is still twice as high in black women. And he said, I'm not convinced that we can reduce the black rate to what the white rate is because of our current state of our knowledge, because I don't know what the rest of the problem is. So at the time, you know, in the hearing, that comment got a lot of backlash. A lot of the public health officials, the doctors, the nurses who were in the room at that hearing were just appalled that he had said that. And one of them, Vicki Alexander, who is still alive, she's in her late 70s now and she's still working to improve things for black women and babies. And she just said, you know, how can you say that? I've said it the bedside of so many black women who have lost their babies. And she, you know, was talking about the lack of action on the federal level and she called it genocide through neglect perpetuated by the US government. Basically that, you know, they were saying we don't, we don't know what the problem is, we don't know how to fix it. And she and so many other people in the room were just saying that that is unacceptable and that that wouldn't be acceptable for other groups in America. So during that hearing and also just over the course of the decades, it is really shifted from a very blame focused thing that black women must be doing something wrong. They're not getting enough prenatal care, they're not educated, they're not taking care of themselves. And there have been so many studies that show that just as the assistant secretary of health and human services at the time knew, you know, that wasn't the explanation. So then it shifted to questioning genetics, you know, is it something where black women are genetically predisposition to preterm birth or something like that. But there have been studies looking at African born women who come to United States and have babies and their birth outcomes are much more similar to white women. So it's something that is about the lived experience of being a black woman in America because those African born women who come here have babies. Their children, when their children have babies, their birth outcomes are worse. So they, you can see that deterioration just in a generation. So where a lot of public health conversations are moving not everywhere in this country, but in a lot of areas, people are pushing it to a question about the social determinants of health. What are the social things that are causing this from things like chronic stress that can lead to things like preeclampsia, the high blood pressure that you've even heard celebrities like Beyonce and Serena Williams talk about their experiences in childbirth as, you know, very fit and famous and rich women who have had these experiences. What are the things that can not only lead people to those types of conditions over the course of their lifetime, but also how black women are treated by the medical system. Are they listened to? Are they respected? Are their issues taken seriously? Are there any other aspects of that that are related to the social and social determinants that are related to the social determinants where a lot of the focus is now and in L.A. County and in other parts of the country, public health officials are calling out racism. They're saying the word racism lot, structural, institutional and interpersonal and how are things like implicit bias, things that can really impact women in the care that they receive, but also impact them on a personal level that can lead to chronic stress, that during pregnancy, which is already a stressful time, can lead to worse birth outcomes. What if your family was the victim of a home invasion, or you woke up in the morgue, or you were seriously injured miles from help? What would you do? This is actually happening, asks our listeners this very question, while we bring you captivating real life stories of trauma and perseverance. This is actually happening brings listeners extraordinary true stories from the people who lived them. You'll hear stories about conflict, turmoil, or threats that dramatically alter the course of someone's life. Each episode is an exploration of the human spirit and how survivors manage to overcome hardship and move on with their lives, even thriving afterward. The new season of this is actually happening is available ad free only with Wondry Plus, and if this new season isn't enough, you can listen to more than 120 exclusive episodes available only to Wondry Plus subscribers. Join Wondry Plus on Apple Podcasts or on the Wondry app. Well, let's talk a little bit about how black women are treated by the medical system. So in a series on black mothers and childbirth, MPR reported that underlying problems like the lack of health insurance and lower quality of care are amplified by an unconscious bias. They also reported that in more than 200 stories they collected, what they said was the feeling of being devalued and disrespected by medical providers as a constant theme. What is this devaluation and disrespect that black women face when they attempt to get medical care and what are the real consequences of it? Yeah, and I should say that maternal and child health in this country, the rates are really bad compared to other developed countries. Overall, a lot more babies and a lot more moms are dying and we see the disparities as you mentioned in the maternal death rates. So for black women, black women are three to four times more likely to die in childbirth or because of childbirth related complications soon after birth. We see these problems, we hear these stories over and over again. In my reporting, I talk to a lot of women who had eerily similar stories and every time I read an article about it, I see such eerily similar stories. Often women feel that throughout their prenatal care, when they're getting it from the beginning, they're often brushed aside, you know, have very fast appointments. And usually around six and a half months in, there'll be some spotting, there'll be some pain, you know, they'll talk to their doctor about it, they'll attempt to, but they'll be brushed aside. Oh, you know, this is your first pregnancy, maybe you're not used to this, you're fine, sent home, not, you know, not heard, and then end up going into preterm labor and often lose the baby or the baby goes into the neonatal intensive care unit. And doesn't make it out of there. I heard so many stories like that that I just described from so many women and it's very similar to what my sister experienced, you know, not feeling heard and going into preterm birth. And a lot of the conversations when we talk about solutions around this, it's really putting it kind of back on to the women in a lot of ways, you know, there are conversations around implicit bias training for doctors, you know, to be aware of how they may be treating people differently. But in terms of what women can do, it's a lot of talk about self advocacy and, you know, finding a doctor that you connect with and then really not taking no for an answer, which is, you know, which is hard, which is, you know, is a hard thing to have to put on a woman, you know, there's often a lot of conversation about dualas or other birth advocates who can be there in the room with the women to kind of speak up when, when they may not be able to. You've mentioned that you have a personal connection to this story with your sister, but you also have a geographical connection to this story because you've discovered that in Los Angeles where you live, this problem is actually worse. What might explain that? Yeah, so it's something that's surprising to a lot of people because when you think about California, you know, a lot of people who I talk to within in public health were surprised that, you know, this was an issue that California was dealing with in LA in particular because think about there being, you know, kind of a better access to to health care here. And the infant mortality rates overall are much better. It's closer to the desired rate to the target rate for infant mortality fewer babies are dying in California overall, but you still see that gap, you still see a higher rate of death for black babies. And in LA County, the rate is actually three times higher and in a lot of areas in northern California in the Bay Area, you see a wider gap there as well. And, you know, some of the things that are in the conversations here is that, you know, there could be different pressures, you know, there's starting to be some research done on how black women who are actually more successful may have higher, you know, higher stress levels because of the environment so they're working in that can play out in terms of their birth outcomes. But there are also a lot of issues of isolation when we talk about solutions for this issue, it's often a lot of group care models, you know, centering pregnancy is something that you'll hear about where women are actually put into groups to have, you know, group care sessions. And in LA, there are a lot of issues with even getting to have, you know, black women doing this work kind of empowering them uplifting them to the sprawling county. So there are all these different pockets and isolation is something that is a big issue here. There are a lot of disparities in the hospitals and, you know, we talked a little bit earlier about insurance and how that can really play into this sometimes black women who may be on on Medicaid or, you know, MediCal, which we have here are just perceived very differently and given different treatment, even when they try to go to a better hospital to seek it out. The housing insecurity here is something that public health officials are focused on addressing, how does housing impact stress. You see these disparities all over the country and in a lot of areas where you may say, oh, you know, this is probably not an issue here or not as much of an issue. But that just goes to show that this is such a persistent problem and then that you really do need targeted approaches to fix it because when you look at the graphs of how the infant mortality rates have changed over the decades in LA County, you'll see that the white rate has actually gone down. And so that's what caused the rate to go from twice as high to three times as high as because the white rate actually got better and the black rate didn't. So another major theme in the infant mortality, you know, in the solutions that have been tried over the years, there's been like a lift all boats approach. Let's try to just improve care for everyone and because there isn't that culturally sensitive, you know, care given to black people by black people, you often see that the white rate will improve or other groups will improve. But the black rate will not and the new leadership of the Department of Public Health has in LA County, this is someone who came from Massachusetts, her name is Dr. Barbara Ferrer, she's the new head of the Department of Public Health for LA County. And she's saying that that approach does not work, we need targeted outreach, we need specific things for black women for black families. And that's what can make a difference because otherwise you will continue to see the gaps actually widen. Well, here we are then having identified an issue kind of ruled out many of the more obvious and frankly treatable causes. It's not endemic genetically, it's not a socioeconomic problem, it seems, you know, when we get down to it to be a systemic racial issue, that's very large and hard to deal with. So for those people that are trying to tackle this issue, what is their plan? Yeah, I think that what you just said is the reason that this has been such a persistent issue because it's not something that can just be tackled in the clinical setting. When you look at the maternal death rates, for example, there have been kind of like toolkits that have been made for hospitals to track blood loss, to track pulmonary embolisms, that type of thing, like checklists that doctors can go over and nurses can go over to prevent maternal deaths. But when we realize that infant mortality is linked to the life course, to the lifetime of a black woman, and that is what we need to fix, you know, that's something that takes every aspect of society that touches her. So that's why this is something that's so complicated and it's something that also will take a long time to show results. But you know, some of the things that I looked at, one of the programs is something called the best baby zone. So this is something that tries to do kind of exactly what I said, looking at the whole life course, looking at improving everything for a whole community, and that that will help black women. So I looked at the best baby zone in Oakland, which is one of nine across the country, these neighborhoods that have high rates of infant mortality, health workers, social workers go in, and they empower the community locally to address the issue. They say, you know, what's the biggest problem for you here? And some of the communities, it's been transportation in Oakland. It was economic empowerment. The fact that, you know, there was really, there were no stores, there's no, there's nothing in that community. So everyone has to leave for work. There's no way to keep the money there. So part of the solution was something that doesn't really seem connected to infant mortality at all, but it was starting a community market on the weekends where local vendors could come and sell things where there was a place for kids to play. And then there are also presentations from the Department of Public Health on, you know, best practices for pregnancy with linking women to hospitals or dual services. There was a boot camp for dads. And this was something that they started as a way to bring people together, you know, keep some money in the community and also educate the community and support families. So that's something that's, you know, going on in a few neighborhoods across the country, it's very intensive. And, you know, they're not expecting to like publish some paper next year that's like, oh, we fix this. This is a really a long game. And I think another, another important thing to do is just to frame it and make it clear that it's not just a black issue. You know, we have some of the worst infant mortality rates in the developed world. And in order to bring those down, you have to get the black infant mortality rate down. So this is something that can help society overall. And, you know, the costs of of Nick, you care of neonatal intensive unit care. The burdens on families when babies are born premature and they have lifelong issues, you know, this is something that really touches everyone. So kind of making that clear to people is part of the framing that I think needs to shift. So it's not just like, oh, this is their problem. You know, they need help. But at the same time, it is important to empower members of the black community. Did you find other than the official you mentioned at the top of this interview, anyone who referenced Tuskegee or had a suspicion of the government officials or the medical industry is this part of the problem as well. You know, that's not something that I tackled head on. So it came up a few times, but I think in general, trust in community building and outreach is really important. And is a big part of the solutions. You know, I think it was really interesting and listening to the podcast, you know, how how much the Tuskegee participants were were craving the medical care and how that, you know, had that had somehow attracted them or or, you know, from the public health department's perspective was like, oh, well, you know, they're getting this care that they wouldn't be able to get otherwise. That was just something that was that was really startling to hear, but I think it is connected to when you talk about the importance of total prenatal care and, you know, black women getting care as soon as possible. You know, there are there are trust issues. There are trust issues from a personal level where, you know, women have had or heard of other experiences where, you know, people have had bad experiences with doctors, you know, not listening to them. And why should I go and get that care if I'm at this higher risk? At the end of your article in the LA, you mentioned that you were talking to Dr. Bickey Alexander, who was at that congressional hearing in 1984. And that she heard you sigh when she was talking about, you know, what might sound like the futility of this issue, but she told you that you shouldn't be sighing that it's okay. And was reassuring. Why do you think she felt that? And do you? I'll say again. Yeah, I mean, I think that she she felt that because, you know, there has been there has been progress that she's seen in her lifetime. I think it's frustrating for her and for people like her to continue having these conversations to have to present the very basic data points to kind of push people past their stereotypes. But, you know, after that congressional hearing, there were programs that were developed. There was more funding that was created in fit mortality rates across the board have gone down. But you do still see those gaps. So I think that she is optimistic because from her vantage point and from a lot of other researchers, I talked to, they say that this problem was, you know, decades, hundreds of years in the making. And that we can't expect a solution overnight. But I think she's encouraged to see racism moving more toward the forefront of the conversations. And a shift away from some of the blaming of black women and black people for having this issue, you know, blaming them for having, for having these experiences, these negative experiences. So I think that she sees hope because there is a shift in the conversation and how we're talking about it. My hope is that that conversation is sustained. And, you know, there's not like these little flickers every, you know, every few decades where, you know, we're kind of talking about this in a different way. And then we move on to some other issue. So yeah, I'm encouraged by some of the conversations and the way that the framing around these issues has changed. I just hope that, you know, in 30 years, there isn't some reporter like quoting my article about this. Well, Prisca Neely, thank you so much for talking to us today. It was a pleasure. Thanks for having me. That was my conversation with Prisca Neely. You can find Prisca's reporting on black infant mortality at and at American scandal returns next week with an all new series. On the morning of December 29th, 1890, US cavalry troops confronted a group of Lakota Indians. After some miscommunication, a rifle went off and the US Army began shooting. 83 years later, a few hundred Lakota and other Indians returned to the site of the massacre wounded me. From wondering, this is episode five of five of the Tuskegee syphilis study from American scandal in our next season. Nearly a century after the US Army slaughtered hundreds of Lakota Indians at wounded knee creek. An militant civil rights group called the American Indian movement seizes wounded knee, sparking a 71 day standoff that provokes the full force of the United States government. American scandal is hosted, edited and executed produced by me, Lindsay Graham, for airship, sound designed by Derek Barrett. This episode was produced by Lee Hernandez, editing by Casey Meier. Executive producers are Stephanie Jenns, Jenny Lauer Beckman, and her nonmopez for wandering.